My New PDM

After four years filled with various highs and lows, I had to say farewell to the PDM that was virtually glued to my side, working with me to manage my diabetes.

Our parting was inevitable. Around the Fourth of July, I noticed that the battery symbol on my PDM was low, meaning that the triple A batteries within needed to be replaced. I put fresh ones in, but upon the system restarting, the PDM asked me to input information such as the date and time. And then…the pod I’d been wearing for less than 24 hours beeped loudly, signaling to me that it had failed. I figured it must be due to the battery replacement, but this definitely wasn’t normal. So I did some investigating.

I consulted with my mom and she told me that this was a sign that the internal battery within the PDM, the one that cannot be replaced, was starting to run out of life. She advised me to call Insulet to get a replacement PDM. That’s how I discovered that the warranty on my PDM actually expired in January of this year, and that I’d have to pay a nice chunk of change (about $500) to get a new one, under warranty.

It was a painful process, as I’ve detailed in recent posts, but I finally did get my new PDM. Fortunately, it only cost me $100 (I guess I should be glad I met my $900 deductible so quickly).

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A very special delivery.

I waited to power up the new system until I was due to change a pod – didn’t want to waste a pod if I didn’t have to – and I’m really glad I set aside a half hour or so in order to input all of my settings into the new PDM. It was a bit stressful, really, and just as I was cursing the PDM for not automatically knowing all of this stuff about me, it was set up and ready for action.

It was a strange feeling, disconnecting myself from that PDM I’d relied on for four years. It sounds dramatic, I know, but that PDM and I have been through a lot. As I powered down the system, I had a little moment and felt gratitude toward the PDM (and I suppose all of its little quirks). I put it inside the box that the new one arrived in, and the old PDM now sits in my diabetes supplies cabinet, neatly tucked away so in the event that I need to consult it for old information or data, I can.

And now I can say I’ve got a shiny, pristine PDM that’s under warranty, which I must admit is a relief.

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3 Tips For Anyone Turning 26 with Diabetes (and Switching Health Care Plans)

Do you have diabetes and will turn 26 in the near future? Will you be forced to switch from your parents’ health insurance to your own plan? If the answer to both of those questions is “yes”, then you’ll definitely want to take a minute to read my tips on how to make the transition as smoothly as possible. And even if you answered “no”, you still might find this to be a worthwhile read because chances are, either you or someone you know will have to go through this process, whether or not you/they have diabetes.

Here are the three most valuable tips I have for anyone who just turned, or is about to turn, 26 years old and is concerned about switching health care plans:

HUGGING THE CACTUS - A T1D BLOG
I figured out these tips the hard way. Save yourself a lot of frustration and time by following them A.S.A.P.

Tip #1: Ask your doctor for copies of all of your prescriptions. Do this well before your actual birthday. That’s what I did, anyways – I had a scheduled appointment with my endocrinologist at the end of April. That’s when I requested a copy of every single prescription she’s ever written for me, including for medications that I don’t really use anymore (e.g., Lantus, the long-acting insulin I used prior to my insulin pump). Then, I made multiple copies of these prescriptions, taking care to separate the originals from the copies. This tip really came from my mother, who told me that having the prescriptions now would save me trouble later. And she was right: When I did send in my Humalog prescription to Express Scripts, I did so with more confidence because I didn’t have to scramble to request it from my doctor.

Tip #2: Start the process of reordering supplies as soon as possible. Even if it means starting to reorder things on your actual birthday…do it. I’d say this is especially important if you’re running low on supplies. It took me nearly two months to start receiving stuff. Part of this was my fault because I procrastinated, and was also at an advantage because my mother took the time to order me plenty of extra supplies before I made the switch. But it was also the fault of the companies I was ordering from, who, for various reasons, didn’t send out my supplies on time or needed a longer period of time to review my orders before shipping them out. I’m lucky that I can say that I was never truly worried that I was going to run out of supplies, but the thought did cross my mind a few times, and it was unpleasant. So save yourself from aggravation and just get the ball rolling as soon as you can.

Tip #3: Keep records of everything. I keep a physical folder that contains receipts, prescriptions, photocopies, notes, and various other documents related to my health. I can’t say for sure what I’ll actually need to keep or throw away in the coming months, but I do know that it’s smart to hold onto this stuff in the beginning. That way, during my company’s next open enrollment period, I’ll be able to make informed decisions regarding things like how much money to put in my flexible spending account (FSA). Plus, any notes that I’ve taken during phone calls have already proved immensely helpful as I’ve needed to track down specific customer service representatives in order to take care of issues that have come up. It can be a little cumbersome to remember to keep all these papers, but I know it’s the right thing to do and that there’s no way that I’ll regret it.

BONUS Tip #4: Advocate for yourself until you get what you need. At first, I felt extremely awkward for calling Dexcom and Insulet every single day for a week. But then I realized that I shouldn’t. They weren’t going to make sure that I had my supplies: I had to depend on myself to do that. I also felt a bit stupid asking just about every customer service representative that I spoke to how everything works, but I eventually got over that, too, because it’s vital to understand this stuff, even when it seems extraordinarily complicated. So I’d tell anyone who’s going through this process, or who is about to go through it, to keep up the hustle. Don’t ever feel shame for asking too many questions or calling too many times; when it comes to all this, the limit doesn’t exist. Ask others for help when you need it (I spoke with all sorts of people in the DOC about my issues, and goodness knows that my mother provided me with all sorts of advice and support throughout this) and, with their assistance and a little determination on your part, you’ll get through this tiresome transition.

Why is it so Difficult to Order Life-Saving Medical Supplies?

When it comes to obtaining my diabetes supplies – life-saving pieces of medical equipment – I’ve discovered that it’s not a simple process. It’s not exactly like purchasing something on Amazon with a single click. Rather, it’s a convoluted, head-scratching, infuriatingly long procedure that apparently involves multiple calls to a variety of companies.

As of this writing, it took approximately 4 calls to my endocrinologist’s office, 12-14 calls to Insulet (the maker of my OmniPod insulin pump), 6 or 7 calls to Dexcom (for my CGM supplies), 2 calls to my health insurance provider, and 1 call to Express Scripts just to get everything all straightened away. These calls took place over the course of 2.5 months, and as they grew in frequency, so did my overall frustration and confusion.

The biggest headache was definitely caused by the lack of effective communication between Insulet and my endocrinologist’s office. I needed to get a new PDM, and Insulet’s job was to contact my doctor’s office and get a letter of medical necessity in order to get a PDM shipped out to me. Simple, right?

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My call log looked like this for several days in July – so many phone calls to Insulet/OmniPod and to my doctor.

Far from it. About a week after I placed the order for the new PDM, I got an email from Insulet saying that my doctor’s office had failed to return their faxes. I was advised to contact them to determine the delay. When I did, I spoke with a receptionist who, despite my clear explanation of the issue, misunderstood what I was asking for and left me a voicemail to say that she didn’t know what Insulet was talking about seeing as their information showed that I had received a shipment from them. (For whatever reason, she thought I needed more pods, which I did have delivered around the same time that all of this was going on.)

After several more back-and-forth phone calls, I cracked the case wide open: Insulet had the wrong contact information for my doctor. While my endocrinologist hasn’t changed in about a decade, her office location has, and Insulet still had the old one. I felt like an idiot for not realizing this sooner, but then again…why was I the one who was jumping through so many hoops and making so many contact attempts in order to figure out what the hold-up was? It was absolutely ridiculous, but I certainly felt relieved – and satisfied – to have personally solved the mystery.

I wish I could say I had a better experience with Dexcom, but that proved to be similarly headache-inducing. I thought that I was set to receive my supplies after I’d signed a payment plan for a 90-day supply of sensors and transmitters, but when they didn’t show up after a month of waiting, I knew something was wrong. I called Dexcom and discovered that the order, for reasons unknown, just didn’t process, so I had to sign a brand-new payment plan and had my case assigned to a different customer service rep. I was pretty pissed off by the lack of communication, but the one silver lining was that I’d already managed to pay my deductible in full (ha, no surprises there), so my Dexcom supply order would cost me less. Again, it was unbelievable that I never got an update from the company regarding my order’s status, but I did feel a sting of pride in myself for getting it all worked out on my own.

I don’t know why everything about this process is so agonizing. But what I do know for sure is that it seems that the only person I can count on to get my supplies ordered properly, in the end, is myself.

Navigating Health Insurance Hell

I am one month into my new health insurance plan, and I’m more confused than ever.

I’ve sent several emails. I’ve engaged in a number of live chats. I’ve made countless calls to my insurance company, my insulin pump provider, a mail-in pharmacy service, and my CGM provider just to try and get some answers. And almost every time I hang up the phone or walk away from the chat service, I feel lost because nothing is clear to me.

Am I stupid?

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I can’t be the only one who just doesn’t get how it all works…right?

Why can’t I just get definitive answers as to how much I’ll need to pay for insulin each month?

Why does my health insurance company advertise a partnership with a mail-order pharmacy that puts a cap on insulin costs…when in reality, it doesn’t (or at least, nobody has informed me that it does)?

Why am I learning, at this stage in the game, that my prescription plan isn’t integrated with my medical plan, which means that any prescriptions I fill using the mail-order service don’t qualify towards my deductible?

Why is it all so convoluted?

As mystified as I am by all of this, I’m coping with a strategy that my parents have helped me develop, which I’ll share with you: Anyone who is going through all of this right now, or anyone who is about to go through all of this, needs to remember to be their own advocate. (I’m reminding myself to do this on the daily.) Frequently, I tell myself that I have every right to make as many phone calls or contact efforts as needed until I understand the costs associated with reordering my supplies. Although it’s easy to get frustrated when a representative on the phone speeds through an explanation or provides contradictory information, it’s important to stay focused on the task at hand.

As I continue to figure all of this out, I’m going to take note of questions that crop up and have a notepad and pen in hand any time I make a call. I’m keeping track of all messages exchanged online and I’m using the next couple of weeks as my fact-gathering stage. It’s almost like I’m assembling pieces to a puzzle…a ginormous, complicated puzzle, but one that will result in a more complete picture of the cost of my prescriptions going forward.

The $2,000 Mistake

Have you ever received an email that made you stop breathing for a moment? Did it feel like time stood still as you blinked rapidly and tried to comprehend the meaning behind it?

It sounds like a dramatic overreaction, but imagine getting a notification from your pharmacy notifying you that your prescription would cost almost $2,000. That’s a big old chunk of change. The mere thought of paying that much for a supply of insulin makes my heart race and my palms sweat.

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I nearly keeled over when I saw this dollar amount.

I’m happy to report that this was a giant mistake; for whatever reason, my doctor’s office sent my prescription for Humalog to my local pharmacy, even though I explicitly told them that I use Express Scripts for my insulin orders. It was a total mix-up, and the approximately $2,000 was an amount that I would pay if I didn’t have any insurance coverage. I do, and though I’m not sure how much I’ll be paying for my insulin yet, I know that it can’t possibly cost this much.

I’m relieved that I was able to call the pharmacy and straighten this out without spending a cent of my money. But it was also a major wake-up call to a reality that many people are forced to face when it comes to refilling insulin prescriptions. It’s not fair. (That last sentence is the understatement of the century.) I can’t make any sense of it and I don’t know how many people have no choice but to fork over such a large sum of money on a monthly basis in order to live. Thoughts of those individuals and their dire situations scare me far more than navigating the world of health insurance ever could.

While I didn’t appreciate the mini heart attack this email triggered, I guess I am glad that it alerted me to the fact that I’m going to have to be aware of things like this going forward. As I figure out my health insurance costs and coverage, I anticipate more confusion, surprises, and expenses…but hopefully I can also expect/experience a pleasant discovery or two along the way.

Hello, 26…and Goodbye, Health Insurance

Well, today is my 26th birthday. As I alluded to a few months ago in another blog post, I’ve pretty much been dreading this particular birthday.

Love always wins.

Today’s the day I’ve got to switch health insurance carriers. I’m going off my parents’ plan and signing up for the employee plan offered by my company.

Am I nervous? Yes. Am I scared? Hell yes. But am I alone? Hell, no. I’m lucky enough to be able to say that I’ve got so many resources in my life – family, friends, the DOC –  who will help me navigate the confusing world of health insurance.

I’m also well aware that many, many other T1Ds have been in this position before me. While it’s impossible to forget the horror stories about people who have been unable to afford their medication due to a lack of insurance coverage, or who have a hard time paying for insulin and other diabetes supplies in spite of having health insurance, there’s so many more people who have found ways to make it work without having to sacrifice their health or general well-being.

So I’m going to focus on how blessed I am to have resources all around me, as well as a job that offers decent health insurance (or just a job, period…there’s plenty of jobless people out there who have double the hurdles to jump over compared to someone like me). Today, I won’t dwell on my fears and anxieties about health insurance. Instead, I’ll celebrate another year of life and enjoy the day.

Why I’m Afraid to Turn 26

I’ve never been afraid of my birthday. In fact, I’ve looked forward to it every single year because of all the fun things that distinguish the occasion. I’m lucky to be able to say that each third of May of my life has been filled with celebration, gratitude, and cake – what’s not to like about that?

But this year is different for me. I’m turning 26, which means I’ll no longer be eligible for dependent coverage under my parents’ health plan. I’ll need to enroll in my employer’s plan and figure things out from there.

to my best buddy,
I don’t want a cake or presents for my birthday this year. I’d rather affordable health insurance.

This is terrifying to me. Why?

I’ve heard the stories.

Alec Raeshawn Smith’s story sticks out to me the most. He researched his insurance options and when he realized that the out-of-pocket costs for insulin were exorbitantly high, he decided to forgo insurance because it seemed more manageable to him.

He passed away just one month after going off his mother’s health insurance plan.

His family believes he was rationing insulin in order to survive until he could afford to buy some more.

There’s nothing about Alec’s story that isn’t tragic. It’s especially sad and frightening to someone who is about to begin navigating the confusing, expensive, and ruthless world of health insurance.

I’m hoping that I never get to a point where I need to pursue the dangerous “solution” of rationing insulin. But I’m also hoping that the biggies of insulin manufacturing – Novo Nordisk, Eli Lilly, and Sanofi – wake up and realize that they’re doing more harm than good. In 1996, just one year before I was diagnosed with diabetes, one vial of Humalog insulin (which I’ve used and continue to use since diagnosis) cost $21. Fast-forward 20 years, and Humalog costs skyrocketed to twelve times the cost at $255 per vial. Why? What could possibly justify this? How could anyone say that it is right for someone with diabetes who needs insulin to survive, and who didn’t ask for diabetes or do something to cause it, to pay that much on a regular basis to stay alive?

One thing is for sure: Insulin prices CANNOT stay as high as they are. There’s simply no reason for it, other than shameless, disgraceful greed.

And that is the simple truth of why I’m afraid to turn 26 this year.